Review of 2020

 Annual Review: 2020

Yet another year has passed, and again I take the opportunity to reflect on the various activities throughout the year. I'll only mention Coronavirus a few times!

Knowledge

2020 has been a bit of a hectic year for me, and I have not really been paying much attention to newly published research findings. I also know that many aspects of research have been slowed down as medical staff have been re-deployed to help with Coronavirus. Reviewing the 2020 publications will be on my early 2021 list!

Symptoms

My changes this year have been fairly subtle. I perceive that when looking back over the whole year there have been some changes, but they have occurred slowly and gradually. This year I have noted that my bladder and bowel are becoming more urgent in their demands for me to go to the toilet, which means that I might need to review my medication next year. I perceive that my walking speed is slower (as measured by needing to walk faster when taking my boys to/from school), and I know that I need to sit down after less time standing/walking than I have done previously. I think my flexibility and muscle strength are about the same, but I think they might be on the change soon. I had a telephone appointment with my neurologist this year. My next appointment will be 2021 rather than 2022.

This Blog

I'm really pleased with the continuing growth in readership of this blog. My audience remains broadly the same (predominantly UK, USA, Canada, Australia, and then European countries, particularly France and Netherlands, as well as Brasil and India). The most popular posts continue to be the questions for and results of my survey, as well as my general posts on research and particular HSP symptoms. 2020 also saw a high interest in my Coronavirus post from March.

I'm really pleased that blog posts continue to be linked to and used within other HSP and RareDisease communities and publications. Thank you to all my readers, including those that give comments appreciating what I have to say. Feedback like this gives me another reason why this is a worthwhile thing to do. Thank you to anyone that makes a comment or connects up with me in some other way. 

Survey

The annual pattern of my surveys is well established. My 2020 survey has a similar number of responses to my 2018 and 2019 surveys. The 2020 survey uses the same path as 2019, where the survey is available in several languages, so people can answer in their own language. There has been more collaboration across countries getting the questions right. The new feature for this year is to try to identify needs, and I have tried to capture some Coronavirus perspectives as well. Results will be out on 28th Feb after the majority of analysis during January.

Community Contribution

HSP Community activities for 2020 included:

• Starting up a YouTube channel for the Support Group
• Encouraging digital meetings for the Support Group
• Carrying on with the Enable disability network at work
• Representing the UK at EuroHSP
• Analysing and reporting the results of my survey to share with the HSP world
• Continuing this blog and posting/discussing HSP things on twitter
• Working with PARC on the latest grant application

The main element of my community contribution comes from being chair of the HSP support group. Whilst we are getting various issues resolved, there are still many to go. I'm working with the rest of the trustees to ensure that the group continues to support its members in the most appropriate way.